Taking Care of Your Mental Well-Being While Living With Hidradenitis Suppurativa (HS)

This article is for people who are living with HS and their care partners, or anyone who wants to learn more about HS. The goal of this activity is to help you talk to and work with your doctor about your mental well-being while living with HS.

You will learn about:

• HS and its symptoms

• Flare-ups that can happen with HS

• HS and your mental and emotional well-being

• Getting support and working with your doctor and healthcare team

• Questions you can ask your doctor

Hidradenitis suppurativa, or HS, is a chronic (long-term) health condition that happens when your hair follicles get blocked causing swollen, painful lumps to form under your skin. HS is not pimples or cysts from acne, infected hair follicles (folliculitis), or a sexually transmitted disease or infection (STD or STI).

HS can be different for different people, and the exact cause is unknown. But it's likely due to a combination of your genes (traits you inherit) and other factors such as your hormones, smoking, and being overweight.

HS symptoms can be different for different people. Some may have mild symptoms, but for others, HS can be severe and greatly affect their quality of life.

HS symptoms can include:

• Itching, burning, discomfort, or pain

• Small, indented areas with blackheads

• Painful, pea-sized lumps that can last for weeks or months

• Lumps that can break open as sores that are slow to heal and can drain fluid that has an odor and blood

• Tunnels under the skin that can cause scars

HS can last for years and have times where symptoms improve (remission) and then get worse again (flare-up).

Factors that may trigger flare-ups can include weight gain, stress, hormone changes, heat, sweating, and getting your period. Taking steps to try to avoid triggers and prevent flare-ups may help manage HS and its symptoms. But triggers can't always be avoided, and flare-ups can also sometimes happen without any known or identified cause.

For many people, living with HS does not just mean having a skin condition. While it is rarely life-threatening, HS can be extremely painful and seriously limit your physical ability and functioning. It can also get worse over time and even affect your daily life and mental and emotional well-being. 

With HS, sores can remain open, be painful, and need special care. They may also drain blood and fluid that has an odor. Tunnels and scars can limit your movement and may also cause pain. All of this can affect your sleep and ability to do daily tasks or participate in activities and impact your personal, social, and sex life.

For many people, living with HS can affect their mental and emotional well-being. The impact of HS on your daily life might even make you feel anxious, embarrassed, self-conscious, isolated, angry, or depressed. And the fact that HS can be chronic and last for many years may add to these feelings.

People who are living with HS can even have similar levels of anxiety and depression as people who have other health conditions such as cancer, chronic obstructive pulmonary disease (COPD), stroke, and heart attack.

But support is available and there are ways to help you cope with stress.

You're not alone, so don't hesitate to ask for help with ways to cope with stress and improve your mental well-being. Tell your doctor about how HS impacts your daily life and how you're feeling. They can put you in touch with a support group, organization, counselor, or mental well-being professional. They can also help you find ways to talk to your family and friends about HS.

Some people who are living with HS find that making lifestyle changes like quitting smoking, changing their diet, and losing weight can help manage symptoms. But this may also add stress. So be sure to talk to your doctor about ways to help you quit smoking and your doctor or a dietitian or nutritionist about making a healthy diet plan.

Finding the HS healthcare team that's right for you to help you get the care and treatment you need can be important.

Talk to your doctor and dermatologist (skin specialist) to make sure they understand HS and the impact it can have on your daily life. Your doctor may recommend you also see other specialists, such as those who can help you with pain, exercise, and diet.

Keeping all your medical appointments and having open communication with your team can be key. HS can change over time, so be sure to track your symptoms, flare-ups, and any triggers. And tell your team about the impact HS has on your day-to-day activities and your personal preferences for treatment.

Questions you can ask your doctor about HS can include: 

• How can we help manage HS and its symptoms and improve my quality of life?

• Are there any lifestyle changes I should make?

• How can I help prevent flare-ups? Are there any triggers I should avoid?

• What type of diet and exercise plan do you recommend?

• What treatments are available, and what are their side effects?

• Are there other doctors or specialists I should see?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information or resources?

You have successfully completed the program: Taking Care of Your Mental Well-Being While Living With Hidradenitis Suppurativa (HS).

View Additional Materials on this topic that you may find useful:

HS Foundation

Hidradenitis Suppurativa

Hidradenitis Suppurativa -- National Institutes of Health

Hidradenitis Suppurativa -- US National Library of Medicine

HS Diagnosis, Treatment, and Steps to Take